Our son was hospitalized for the first time when he was just 28 days old.

This was the most terrifying experience of my life to date. Little did I know that it was only the start of this incredible journey. But I’m getting ahead of myself. Let me back up and start from the beginning.

It wasn’t until my partner and I were in our mid-30’s that we decided to open the door to the possibility of a baby. We weren’t about to go to extreme measures to achieve this, we simply stopped all birth control measures to ‘let nature take its course’, as the saying goes. We figured if we were meant to be parents, a pregnancy would result, and if not, then it wouldn’t, and we would be content with that, too. And wouldn’t you know it – a month later I was pregnant!

I ate well, exercised regularly, took all my vitamins, and did all the things you’re supposed to do when you’re pregnant, avoiding the things you aren’t. I read all the books, and felt as prepared as I could be. It was an “easy” pregnancy, although our lives were very stressful through much of it for reasons unrelated to the baby (see this post), and an “easy”, fast, uncomplicated birth.

We were, of course, delighted with our gorgeous new son, all 10 & 1/2 pounds of him! It was love at first sight for us both. There were some minor issues early in his life, mostly to do with his skin and that generalized, unexplained fussiness that some might have termed “colic”. He didn’t sleep easily or especially well, and had long periods of screaming, necessitating our taking turns walking the floor with him in the wee hours of the morning. As first-time parents, we just did what we had to to get through each day, figuring it would all shake out eventually.

One morning I was trying to nurse him, and didn’t like the sound of his breathing. He was sort of grunting on each exhale. This sounded vaguely asthmatic to me, and of course I was worried. I called a friend – a woman who had raised four of her own children – and had her listen over the phone. She didn’t like it any more than I did. I woke my husband and told him I was taking the baby to our local emergency room.

Five hours later he still wasn’t nursing, wasn’t sounding any better, and the doctor on call in Emerg. referred me to the pediatrics department at our regional health centre – an hour and a half drive away. The long and the short of that is that by the time we arrived and were whisked into the emergency room to see the pediatrician on call, he was severely dehydrated and still wheezing. He was admitted immediately – they called it pneumonia for lack of any better diagnosis – and put on an IV.

Two days later, and no real answers as to what had caused this trouble, he (we) were discharged from hospital and sent home. Nobody ever gave me a satisfactory diagnosis, and follow-up was limited to a single visit with the peds doc who admitted us. His “answer” was to shrug and say “sometimes we just don’t know”.

Fair enough, I guess.

Other things started to crop up. Continuing fussiness. Sleep disturbances. Eczema that covered 85-90% of his little body. Staph A infection. Diarrhea that lasted two weeks, despite repeated visits and calls to the doctor. Finally he ordered blood work and referred us to yet another pediatrician. This one took one look at the blood work results that had come in just that morning, and admitted us again to hospital. Apparently his electrolytes were so out of whack that he was in imminent danger of going into seizures. The official diagnosis this time was “Failure to Thrive”.

It should be noted that all of the above took place over a period encompassing the period of five months, from the age of 28 days until he was admitted again at almost 6 months. During that time we tried everything to figure out what was going on. We saw several doctors, none of whom were interested in trying to get to the bottom of the problem, just to control symptoms. We saw a naturopath and tried out multiple remedies both for him and for me, the breast-feeding mother. We thought that food allergy might be part of the equation, so I finally went on a serious elimination diet – ultimately dropping down to a dozen or so foods that I thought were “safe” (oats, rice, meats, vegetables, fruits), and slowly adding foods in one at a time to gauge reactions in our son.

Eczema flare-up

This worked to a point, but by this point his symptoms were way out of control. During his hospital stay was the first time in nearly 6 months that he (and I) slept for a period exceeding half an hour at a time. He had been completely miserable for months between upset tummy, diarrhea and weeping eczema over most of his body. The doctors in hospital put him on more intravenous fluids and dosed him with antibiotics and Benadryl. The latter finally got his itching under control long enough for him to get some sleep and begin to heal. (We have since found a better alternative to benadryl – it works as well without the ‘drowsy’ side-effects – Hylands Hives)

We were then transferred to Sick Kids’ Hospital in Toronto, where he was worked up from every angle – Immunology, Allergy, Dermatology, General Pediatrics. The poor kid had blood taken at least once a day, usually more. He’s a terrible bleeder, and only had one “good” vein to tap, according to the hematology people who came to our room. Often they had to repeat pulls when they would clot or couldn’t get enough on the first attempt. He was a pincushion, and I learned early on that I had to be OK with the blood thing, or he wouldn’t be. It was easier for him if I was there, but not if I was going to be hysterical. And I’m what the blood lab people refer to amongst themselves as a “flaker”. I pass out when I have blood taken. I pass out when I witness other people having blood taken. But it’s amazing what you can do when you’re “The Mom”.

After two weeks in two different hospitals, still there were no real answers for us. The Allergist that we saw at the first hospital said he didn’t think it looked like an allergy issue (although he didn’t actually TEST for anything), he felt it was an immunological problem. The Immunology Department at Sick Kids said that there was nothing wrong with his immune system, that in fact it is “robust”. So where did that leave us? Back at square one, I’m afraid. But at least our son was feeling better, and some of his symptoms were starting to abate. The diarrhea had cleared up, and the eczema was better. Not gone, but better.

We were discharged with orders to follow up with the Dermatology Department, which we did. But again, we were back to controlling symptoms with steroid ointments, not searching for root causes. Not good enough for me. Not good enough for my son. We continued our research. We talked with other parents. We searched the Internet. We continued the Elimination Diet (under guidance, to ensure that I was receiving sufficient nutrients to nourish both myself and my baby).

We started feeding Gabriel solid foods, and this is where we really started to see distinct allergic responses. Banana was the first. It was not good. Five hours of screaming later, he passed the half-teaspoon of mashed banana undigested into his diaper. Looked just like it had going in. Barley cereal sent us to hospital via ambulance. When the hives started coming out (enormous, half-inch to one-inch sized rounds all over his little body, starting on his head), I called Telehealth. I was still on the phone with them when he vomited most of the cereal and the benadryl I had dosed him with into the sink. The nurse on the line with me said, “I’m just going to call you an ambulance now, ok?” I said “You do that.” Luckily this time the reaction was halted before it affected his breathing or other vital systems. We came home from Emerg. many hours later, wrung out, but a step closer to knowing what we were dealing with.

I started doing more homework. Barley, it turns out, comes in several forms, under a number of names, most frequently “malt”. And it’s in everything. At least in many, many, processed foods. Breads, cereals, snacks, flavourings, dressings, sauces. In an amazing array of products. I found, after some trial and error, that there wasn’t a “safe” amount of barley that I could consume that he wouldn’t react to through the breast milk he was still getting from me. Even trace amounts would cause him to have itchy, rashy reactions within a few days.

Since then – he was 8 months old at the time of the Barley Incident – we have tested egg, dairy, sesame (only through breast milk), soy, wheat and flax. Soy is fine so far. Wheat is a qualified fine; Small amounts are ok, larger amounts cause symptoms – rashes, mostly. At least this means that, while we wouldn’t feed him wheat regularly, he could have a small exposure without anaphylaxis, and there is some hope that he will outgrow his sensitivity to it. All of the others – egg, dairy, sesame, and flax, are definite allergens, and all of them cause pretty extreme reactions.

We have also found out through all our medical interventions that he cannot tolerate oral antibiotics. They cause him to react with “two exits, no waiting”, or vomiting and simultaneous diarrhea. Topical antibiotics seem to be ok.

Mold is another problem. This we only discovered after we moved from one home – with a wet basement – to our new home that does not have such problems. His eczema, up to that point a running battleground – suddenly cleared completely within two weeks of the move.

The other big change that we made in our lives, that had a huge effect on his allergic landscape, was to go completely detergent-free in our home (Detergent referring to SLS or Sodium Laurel Sulphate and others of that ilk). This entails quite a process, and includes ALL cleaning products – soaps, shampoos, laundry detergents, dishwashing, even toothpaste. Eliminating detergents and moving to all natural soaps has helped a great deal in clearing his skin and keeping the irritants to a minimum. For more information on the link between eczema and detergents, as well as the differences between detergent and soap, and how to go about eliminating detergents, this website is a wealth of information.

Gabriel at 3

Today, Gabriel is nearly three years old. He is a happy, healthy, regular kid who loves to be as active as possible, plays outdoors every chance he gets, and engages with other kids. His skin is generally clear and free of rashes, although occasional flare-ups do occur. Sometimes we can pinpoint the causes, sometimes we can only guess. But we are always able to get on top of the problem and clear it up in short order.

He IS still highly allergic. We carry an Epi-Pen for emergencies – we have never had to use it, and I hope we never do. He is sensitive to a number of environmentals such as molds and tree pollens. If a dog licks him, he will swell up and come out in hives. And he has multiple food allergies – dairy, barley, egg, sesame, flax, banana, to name the worst offenders. He also has some foods that he is sensitive to, meaning he may come out in a rash from eating them, but not likely to have an anaphylactic reaction.

To look at him you’d never know he has life-threatening allergies. That’s why it can be nerve wracking sometimes to be out in public with him, even at our local park or family functions. His reactions are less frequent now because we control his home environment and watch carefully when we are away from home. But people will sometimes offer him food, and I have to step in and stop them. Buffets invariably contain foods that he cannot have, and often are placed at kid level. We must carry our own food anywhere we go, as there aren’t many places that we could go and pick up snacks or meals for him.

People who take the time to ask questions about his allergies often comment “I don’t know how you can DO all of that!” But I tell them that the things we do to keep our son safe are now just so deeply ingrained into our lives, habits and world, that we barely think of them anymore. They are just the things we do every day. It is really the only way to function and maintain sanity! We don’t lament his challenges – we accept them and work with the reality of them, while celebrating the beauty and joy of having him in our world.

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Disclaimer

This site shares personal experience and information only and should not be taken as medical advice.

Everyone's heard the stories...Food allergies, especially in children, are on the rise.

But hearing these cold statistics cannot evoke what it feels like to live with a severely allergic child; How it changes the lifestyle, eating habits, and stress levels in their homes. How leaving home to go on a 'normal' childhood excursion like the beach, park, or play centre can become an event requiring extensive preparation and increased vigilance. To say nothing of going to a restaurant, kids' party or family gathering.

Any of these can be life-threatening events to a kid with anaphylaxis. And no matter how supportive our families and friends try to be, nobody really understands how it feels unless they've lived it.

That is why this blog exists...To begin to build a community for those who don't have one, to offer support and understanding, information and thoughts to one another, with some laughter along the way. Life is a journey, and boy are we on some kind of a trip! Not the one we thought we were signing up for, perhaps, but walking through it all the same. Much nicer to have some friends along for the ride.